Diagnosed with BeriBeri/Wernicke's Encephalopathy... Help!

Prayers for a speedy resolution or movement to a better facility.  How scary.  Do you have B1 that you can take now?

 Yes, I have been taking my own B1 orally.  I'm taking 300mg per day at this point.  I'm just afraid that I may not be absorbing or able to uptake what I am taking orally, but there is no harm in trying.  

Bean, take care and continue to be PROACTIVE in your care. I'll be thinking about you.

 Wow - we need to get to the bottom of this and get you the proper care immediately.   I sure hope you receive competent answers and care soon.   

Bean,
Praying they have started treatment ! They do NOT need the results to start treatment ! If they have not , I hope you have moved to over so Dr E can take care of you. Prayers being said for you !

Bean...sorry to hear you going through this. Don't have much to offer, but prayers.

Take care and keep us posted!!!

Nika

I asked around about you, Bean.  I'm concerned.  Here is the reply I got:

First, the complication she describes (Beriberi and or wernicke's encephalopathy) is serious and can lead to permanent damage to the brain and heart. It is serious.
Second, thiamin stores within the body are limited to about 30 grams and stores can be rapidly depleted (within 1 -2 weeks). So, thiamin deficiency is almost always a rapid, acute medical emergency.

 Carbohydrate rich diets will cause rapid depletion of thiamin; magnesium deficiency must be treated simultaneously; decreased protein and folate levels can reduce thiamin absorption (remember - serum folate is not a good measure of folate status); alkaosis (blood with a high pH) can destroy circulating thiamin; excessive glucose adminstration in the form of IV fluids while admitted to the hospital to a person with low thiamin stores will exacerbate thiamin deficiency and vitamin C improves thiamin status.

 I would treat this patient with:
500 mg IV 3 times per day for 2-3 days (while in the hospital), then 250 mg IV daily until improvement in symptoms and then 100 mg 3 times per day taken by mouth as long as the patient has GI complaints and then 100 mg per day (for life possibly).

However, there are multiple deficiencies that cause neuropathy and these levels should all be checked any time neurological symptoms appear:
homocysteine, methylmalonic acid, RBC copper, ceruloplasmin, whole blood thiamin, C-reactive protein, RBC magnesium, pre-albumin, arterial pH, if possible at all possible... RBC transketolase, lactic acid and pyruvate.
no exceptions to RBC - the serum values are worthless.
RBC = red blood cell
If serum thiamin is used to measure thiamin status and the CRP is elevated you could easily diagnosis this patient with thiamin deficiency and you would probably miss the actual diagnosis >50% of the time. Gotta have an expert looking at these labs.
She can email me and I will help her...

 Thank you Scuba!  Once I have all my labs, i will PM them to you to pass along.  The ones I have now are the standard ones run in the ER- CBC, CMP, PT/INR, PTT, ect...  All of those are essentially normal, I've reviewed them myself.  Here they are...  

CBC- 
WBC- 7.21
RBC- 4.33
HGB- 14.3
HCT- 41.7
MCV- 96.4
MCH- 33 H (range 27-31)
MCHC- 34.2
RDW CV- 11.7
PLT- 204
Absolute NRBC- 0
Absolute Neutro- 4.30
Absolute Lymph- 2.28
Neutrophils-59.6
Lympocytes- 31.7
Mono-5.43
Eosin- 2.82
Baso- 0.519
Nucleated RBC- 0
Sed Rate- 21 H (range 0-20)

Coag Factors-
PT- 11.8
PTT-32.8

CMP-
Sodium- 138
Potasium- 4.0
Carb- 25.0
Chloride- 108 H (range 98-107)
Glucose- 92
Urea Nitrogen- 14
Creatinine- 0.6
Calcium- 9.2
Total protein- 7.0
Albumin- 4.4
Globulin- 2.6
TBIL- 0.38
AST- 20
ALT- 22
ALP- 61
AMYL- 54
Anion Gap- 5.0
A/G Ratio- 1.7
BUN/CREAT- 23.3 H (range 12.5-18)
Calc Osmolality- 285.3
Lipase- 37

Yes.  PM me.

NOW.   :)